Intro

2 Jan Light at end of tunnel

Hello folks,

I was diagnosed with an aggressive primary, locally advanced breast cancer last year at the age of 33, and kept a journal of my experiences and tips that helped me through treatment. Apart from the cathartic element of sharing my experiences and tips (which I am doing in an A-Z format – hence the name!), I do hope that they will be of help to someone out there facing the cr*pness that is cancer. Please bear in mind that these posts are based on MY personal experience and I am not medically trained, so any references to the medical side of things is based on what I’ve been told or read – do not take my word over your healthcare professionals’! Please remember we are all different and will react in different ways to everything “C” – both emotionally and physically. Much of what I write will not be applicable to those with secondaries or other types of cancer.

Breast Cancer TreatmentIt is a bit of a work in progress and I will be updating it daily over the next few weeks, so please bear with me.

To any of you about to start treatment, it’s not as bad as you think it’s going to be. For those of you in the throes of treatment, there is light at the end of the tunnel and you are getting closer to it, day by day.

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Index

20 Dec a to z of all things c

A to Z of everything C

This blog is in the process of being written and links will be made live as the post is published. If you would like to receive notifications of a new post, please follow me – either on FacebookTwitter or by email (enter email address on the sidebar on the right).

Introduction

A is for… Alternative and Complimentary Medicine

B is for… Beauty Tips During Chemo

C is for… Chemo Schmemo

D is for… Diagnosis – A Life-Changing Event

E is for… Emotions

F is for… Family and Fertility

G is for… Gift Ideas

H is for… Hairloss

I is for… I’ve finished but I still feel rubbish…

J is for… Jumping the Gun – “Scanxiety”

K is for… Keeping Hair – Cold Capping

L is for… Lymphoedema

M is for… Menopausal Symptoms

N is for… Nutrition and Diet

O is for… Operations

P is for… Preparing Yourself for Treatment and Surgery

Q is for… Quacks

R is for… Reconstruction

S is for… Sex and all that Jazz…

T is for… Tamoxifen

U is for… Underwear

V is for… Virtual Friends

W is for… Weighty Issues

X is for… X-Rays, Tests and Scans

Y is for… YAAAAAWN – Dealing with Fatigue

Z is for… Zapping those Cancer Cells – Radiotherapy

A is for… Alternative and Complimentary Medicine

20 Nov Alternative Medicine Cancer

This is a bit of a minefield and I’m not going to dish out any advice as don’t want to give you any wrong info. All I would say is check with your oncologist before you use any alternative or complimentary medicine, vitamin and mineral supplements and even aromatherapy agents.

For example, I was given some lovely lavender bath oil as a de-stressing pressie, but was then told that it can mimic oestrogen and encourage the tumour to grow. I was also given some echinacea and ginseng to boost my immune system, but the concern with this is that it can protect cancer cells from chemotherapy. Ditto with St John’s Wort. I never took it – but was advised that it can reduce the effect of chemotherapy by up to 50%.

So best to check before you take any vitamins or natural remedies. You can then make an informed decision as to whether the benefits outweigh the risks.

Alternative Medicine Cancer

B is for… Beauty Tips During Chemo

20 Nov Beauty Tips Chemo

Chemo does not do wonders for your looks!! Understatement. It parches your skin, can give you awful spots and a bright red and round steroid face, it can make you pile on weight and rids you of your girly eyelashes, eyebrows and luscious locks, leaving your appearance a bit frog-like with a definite cancer-patient air. So if we can do small things to make ourselves feel and look a bit more “normal”, along with a bit of well-deserved pampering, it really does help with our confidence and general well-being.

Hairloss chemotherapy

1) Hair. The most obvious concern for those of us trying to retain a bit of normality, femininity and girliness throughout treatment is our hair. Please see K is for…Keeping Hair – Cold Capping for info on scalp-cooling to encourage some of those follicles to hang in there and H is for… Hairloss for those embracing the baldness. For the majority of you who wont want to use the cold cap or do not have the option of doing so, the best options are to invest in a wig or some headwear that makes you feel good, but is also comfortable to wear. Breast Cancer Care run a service called Headstrong, where they show you the alternatives to wigs, and tricks of how to tie scarves in different ways etc. If you do go down the wig route but cannot find a style to suit you, Trevor Sorbie set up a charity called My New Hair who will style your wig for free. You might even get an appointment with the man himself. I was given an appointment with Trevor, but cancelled when I realised the cold cap was working as I never ended up wearing my wig.

Eyelashes

2) Eyelashes. Some wont lose all of their eyelashes, but will find that they will thin dramatically. Others (like me) will lose the lot despite using expensive serums such as Revitalash. I managed to hang onto a few until my final chemo session when the last hangers-on deserted me. While you still have a few you can get away with falsies (I liked the Shu Uemura natural lash collection), but they are very difficult to apply once the final lashes desert you. (Although TOWIE’s Sam Faiers seems to be able to apply them despite pulling all of her eyelashes out – maybe we should get her to give us some tips)! As my eyelashes hung around until the end and were only absent for a short time before they grew back, I coped with eyeliner and soft shadows and, once made up, my friends said you couldn’t tell that I had no eyelashes. But they could have just been being kind!! I liked the NARS waterproof eyeliner which stayed put all day long despite watery eyes resulting from the drugs and lack of lashes. To preserve those lashes that are hanging on in there, avoid mascara and eye make-up when possible and use a gentle eye make-up remover like Talika Gentle Eye Cleanser. You might want to consider semi-permanent make up if your budget will stretch to it. The results can be amazing, but as the lack of lashes is a very short term thing, it might not be worth investing in, unless you are one of the unlucky people whose eyelashes don’t make a reappearance. When my eyelashes were growing back I used Revitalash and had the most ridiculously longest, luscious lashes. Ladies at the make-up counters in department stores commented on them and everyone thought I was wearing fake lashes. Unfortunately it’s quite expensive, so once the tube was empty I reverted to my normal, au naturel lashes. I do miss my Revitalash ones though…!

eyebrows

3) Eyebrows. When I lost my eyebrows it was the first time I looked really sick and cancer-patienty and my face looked downright weird! I experimented with lots of different eyebrow palettes and pencils. My faves by far were Benefit Brow Zings, that has some waxy stuff that the powder can stick to, and my trusty Dior Eyebrow Pencil which (after a lesson from Sophie Beresiner and the lovely lady at the Dior counter in Selfridges) I applied in flicky lines between 3 points (lined up as points 1, 2 and 3 as demonstrated by the lovely Angelina!) and then used the brush to blend it. The end result was very natural – but you do have to be careful not to wipe half of an eyebrow off when you rest your head in your hands, or have them melt away and slippy-slide down your face if you’re suffering from hot flushes… You could also go down the semi-permanent make-up route which is much more expensive, but gives great results and wont slide off your face when you’re having a warm moment – but research the salon well as some results are better than others – and you want them to be as natural as possible. I was only eyebrowless for about a month and when they started growing back I also lathered them with Revitalash and they grew back very quickly and thick and dark. I then treated myself to a proper brow-shaping with the amazing Jenna Treat – but unfortunately they thinned as soon as I stopped using the serum and I have gone back to plucking them myself, which doesn’t look nearly as good…

Moisturise

4) MOISTURISE. Chemo is very drying and very aging. My skin was very irritated by heavily perfumed toiletries and I made the decision to avoid products with nasty chemicals in such as parabens and sulphates due to the link with cancer. I stuck to organic and natural products and lathered my body in Defiant Beauty Smooth Skin Oil and Smooth Skin Balm. I was lucky enough to be bought lots of pampering treats as presents, so you don’t have to splash out that much, but do invest in a good moisturiser to look after your skin and give yourself a little bit of pampering. One unexpected and pretty gross side effect I had during TAX was that the skin on the bottom of my feet dried up, then cracked and peeled off. It was quite itchy and painful but my chemo nurse said it was very common and prescribed Daktacort which cleared it up pretty quickly and I moisturised using this Mild Mint Foot Balm and Healing Hand Balm – both of which can be used as a more intensive moisturising treatment by applying a thick layer and wearing cotton gloves or socks .

Look Good Feel Better

5) Enrol on a Look Good Feel Better Course.  It’s free and not only do you get some fantastic make up tips from drawing in your eyebrows and eyelashes to applying green primer to reduce the steroid-induced redness, you also get to meet other women going through the same thing AND you get to keep the goody bag full of top-branded make-up such as Clinique, Estee Lauder, Clarins and even a bottle of perfume! It is a real confidence and morale boost.

6) Face. Apply green primer to combat steroid-induced redness. Yes, you apply this green stuff under your foundation in order to eliminate the redness. I like Smashbox Colour Correcting Foundation Primer. You can buy it in a travel size tube which should be plenty for your redder days during chemo. Foundation-wise I wanted something moisturising and light that injected a bit of brightness into my face. I really liked Laura Mercier’s Tinted Moisturiser which also has a high SPF – useful particularly in the summer.

Nails Chemo

7) Nails. Chemo effects the nails causing ridging, brittleness and some drugs, like TAX can make them fall off. I was lucky and my nails stayed put despite not doing anything special to them – just lucky I guess. Some girls I have met along the way had gel nails or painted their nails in dark nail varnishes, however, some of them still lost their nails so I suspect you either will…or wont lose them. I had an prominent ridge for every session of chemo, but just covered them up with some pretty nail varnish. I like Chanel‘s range of colours. If you’re having chemo you’re not meant to have manicures – but I think that as long as you tell them and they disinfect their equipment properly and don’t cut you with cuticle clippers, you should be fine. I also used Defiant Beauty’s Nail Oil which helped with the brittleness.

chemo lips

8) Lips. Some of my BC girly pals who lost all of their hair, eyebrows and eyelashes embraced bold and bright lipsticks to add a much-needed girly boost and splash of colour. You do still have your lips to play with at least!! They’re not going anywhere. They looked fab. I, personally, prefer a more understated look and swear by Benefit’s Posietint which is a lip and cheek stain so you don’t have to worry about it smudging or getting all over your teeth – and I love the pretty pink colour. Be aware that your lips can get very dry too so use a good lip balm if so (I just Defiant Beauty’s Lip Balm – I find other lip balms tend to dry my lips out even more) – and if you are prone to cold-sores that these are more likely to pop up as your immune system too.

chemo weight gain

9) Body Image. Your body image and body confidence can be severely influenced by the type of surgery you have, whether you have reconstruction or not and whether, like me, you pile on steroid-induced weight, feeling rather lardy but too exhausted to exercise properly. (See my post on W is for…Weighty Issues). However, try not to get too upset and hung up by the weight gain during treatment. You will be able to concentrate on shifting the chemo weight once the treatment has finished. See W is for… Weighty Issues. During chemo, try not to be too harsh on yourself, listen to your body, but try and eat healthily when you feel up to it, and maybe treat yourself to a spot of shopping (online or in the real world) to get a few bits of clothing that you feel comfortable and confident wearing. Failing that – how about a nice new pair of shoes…?!!

Cowshed

Cowshed

10)  Steering clear of nasties. The jury’s out on whether parabens and sulphates actually cause diseases like cancer or can encourage them to spread. Many are convinced it does, but others refute the “evidence”. However, with so many lovely natural parabens-free, sulphates-free and synthetic fragrance-free toiletries and cosmetics around, it doesn’t hurt to go a bit more natural. The most natural and organic range I have found is Defiant Beauty – which is specifically designed for cancer patients, but I also love Ren and Burt’s Bees, and the Cowshed products as they are gorgeous and pampering and smell divine. They also cover the full pampering and skincare range from body scrubs to body lotions to cleansers, face creams, face masks, serums and eye balms.

C is for… Chemo Shmemo

20 Nov Chemotherapy sickness

Everyone reacts differently to chemo but the majority are surprised to find it’s NOT NEARLY AS BAD as you had expected it to be. For me, it was like a bad hangover that lasted for a week or so after each chemo session. Actually, I guess that’s exactly what it is – although this time you’re flooding your body with poisonous chemicals to zap those pesky cancer cells rather than poisoning yourself with 2-4-1 cocktails. So basically you get the hangover without the preceding fun. I was never sick but felt very queasy, headachey, tired, fuzzy and emotional. The only thing that made me feel a bit better was eating!  And, like a hangover, salad and fruit just didn’t hit the spot – it had to be as carby as possible.  I, along with many others, had expected to lose weight on chemo (the only silver-lining to it all as far as I was concerned!) but no! Most people pile weight on due to the steroid-induced munchies and queasiness and I was no exception and piled on over 2 stone…

dep_6700130-Cute-chubby-girl

For primary breast cancer, the drugs prescribed differ. FEC tends to be the most common one, but you might start off on AC or EC. These are the ones that can make you feel queasy (and also give you red pee…!). Some people are continued on these for 6 or 8 sessions, while others switch over to T or TAX (Paclitaxel or Taxotore). These drugs don’t cause sickness but can cause aches and pains. All of these cause hair loss. The letters are acronyms for the drugs that make up the regime. If you click on the links it will take you through to the Macmillan website where they explain them in depth. A couple of less common regimes are TAC and CMF. Some drugs are given weekly, others fortnightly, but most 3-weekly. The drugs you are prescribed will vary on your pathology and your oncologist – so check with them if you want to know why they have opted for your specific treatment plan.

The chemo nurse administers the chemo either via a syringe or with a drip, depending on the drug. They will access your veins either using a cannula (where they will need to access your veins at each session), or you might be fitted with a central line, PICC line or portacath. They start off with your anti-sickness meds and steroids (which make you feel as though you have ants in your pants – weird feeling) and about half an hour later will administer the drugs.

My top tips for coping with chemo are as follows:

diary

1) Keep a diary. For the first session of each drug type, just take it easy, listen to your body and make a note of any side effects you experience. This way you can bring them up with your GP, breast care nurse or oncologist which will allow them to adjust the drugs or prescribe something to ease the symptoms after your next session. By keeping track of your symptoms you will also soon learn which days you want to hibernate (and therefore get help with walking the dog, picking the kids up etc) and also which days you feel good (and can book FUN things to look forward to – seeing friends and family, meals out, weekends away, shopping trips etc). Of the ladies I have met during my treatment we all reacted in different ways. Some worked on their good days, others took it easier. You’ll soon suss out what works for you.

vomiting-cartoon

2) Sickness. You shouldn’t be sick. I HATE being sick (would go so far as admitting to a vomiting-phobia) and couldn’t believe it when my breast care nurse PROMISED me that there would be no vomming! I thought chemo = days with your head down the loo or in a bucket. However, anti-sickness meds are excellent nowadays, although it does seem as though they start you off on the lower (and cheaper) meds and increase it if you need it. So if you are sick or do suffer from severe nausea, let your breast care nurse or oncologist know. I felt really sick for the full 14 days after my first chemo (had mine every 2 weeks), but was given Emend for the remaining sessions. It was my saviour and stopped the queasiness instantly. That and comfort food and Queasy Drops!! Others swear by morning sickness remedies such as eating little and often and eating ginger. And others used motion-sickness bands and Nux Vom. If you’re a bit of a sickly person (ie get travel sick and prone to morning sickness) or if you hate being sick, like me – it’s worth telling your oncologist and asking them to prescribe the stronger anti-sickness meds from the start.

no hair

3) Hair. I think the 2 scariest side effects associated with chemo are the sickness and the hairloss. Now, while you shouldn’t be sick, most breast cancer chemotherapy agents do, unfortunately, cause hair loss. Everywhere. And yes, hair grows back, but that doesn’t make you feel any better about the prospect of losing it. And it’s the obvious tell-tale sign that you have cancer. I managed to hold onto a bit of head hair by using the cold cap which freezes your head, shrinks the blood vessels and therefore allows less chemo to reach the hair follicles. As the hair loss thing is such a big issue, I’ve given it it’s own posts. See K is for… Keeping Hair – Cold Capping for my experience. Another friend who was much more gutsy than me and embraced the clippers has shared her experience under H is for… Hairloss.

4) Other side-effects and symptoms. The list of possible side effects is quite daunting and ranges from constipation to diarrhoea, mouth ulcers, flaking skin, acid reflux, pain, headaches, insomnia, fungal infections, hot flushes, depression, early menopause, weight gain etc. Most will suffer from very few of these – the unlucky ones will get quite a few. But DON’T SUFFER IN SILENCE. If you get any nasty side-effects after your first chemo, see your GP or oncologist who will be able to prescribe remedies for most of the above. My physical symptoms were limited to severe acid reflux (I spent one night sleeping sat upright as it felt like I had molten lava coming up my throat when I laid down) and mouth ulcers – but I booked to see my GP immediately who gave me a script for tablets and a mouthwash that soon cleared both symptoms up. And remember if you’re feeling crappy – those pesky cancer cells will be feeling even worse. Also see post M is for… Menopausal Symptoms for tips on dealing with being thrust into chemopause and W is for… Weighty Issues about weight gain on treatment.

5) Steroids. The steroids given to prevent allergic reactions to chemo and for their anti-emetic properties unfortunately have some unpleasant side effects of their own. For me, each chemo session was accompanied by a constantly scarlet face and a manic steroid-high followed by a dramatic comedown when I sank into the depths of despair and cried for 24 hours non-stop, only to awaken the next day feeling OK again! Not much fun, but it only lasts a few days, and if you’re keeping a diary and you’re expecting it, you can ride through it with the confidence that you’re not going doolally.

6) Avoid your favourite things on chemo-day. Although I was never sick, my body obviously realised it was being poisoned and developed weird connotations. Imagine the feeling you get when you think of the alcoholic beverage that tipped you over the edge (sambuca = bleugh). I now get the same feeling when I think of cheese and tomato sandwiches, green tea, nougat, Chanel Mademoiselle perfume (used to be my fave) and a couple of items of comfy clothing that I frequently wore to the chemo unit. Maybe you could use it to your advantage if you have a particularly prevalent mars bar/crumpet/pickled onion habit that you’re looking to shake.

7) Drink LOTS of water. Lots and LOTS of it! At least 2 litres a day. Not only will it flush the poison out of your system quicker but it’s also good for your parched skin. Tennisgirl was also on my water-consumption case and arranged for a lorry-load of Highland Spring to be delivered so I could monitor how much I was drinking. About 800 litres were delivered to my door!

powerport

8) If you have measly veins or hate needles, consider a port, central or PICC line. I had a PowerPort (so American!) which was situated on my chest and sits under your skin so you can wash and swim as normal. (Unfortunately the first one went a bit wrong and I ended up having an emergency op to have the tubing removed from my neck and heart – but that’s another story and is a very rare occurrence ). Needles are still involved as the chemo nurses have to use a small one to access it, but it was numbed first so I never felt a thing which was a relief after so many fumbled attempts by nurses and doctors to access my skinny, little, deep-set veins. My chemo and Herceptin were administered through my port and blood was taken from it for my fortnightly blood tests. I’ve since met girls who had their ports in their arm. I wish I’d had the option as hate the scars on my chest – so that’s something to bear in mind if you’re considering one.

Pills

9) Take all of your medication as instructed. After your first chemo you will leave with a bag full of various tablets. Take all of them as instructed – you have been given them for a reason – mainly to reduce the number of side-effects and to make the whole experience easier. For example, don’t decide not to take the anti-sickness tablets because you’re not feeling sick and don’t feel that you need them. You don’t feel sick because they are working! And if you stop taking them and then get sick, you wont be able to keep them down long enough for them to start working again. ‘Nuff said.

10) Neutropenia and infection. Your white blood count (and therefore immune system) will be abnormally low normally 10-14 days after your chemo and it is recommended to avoid very public places (public transport, theatres, restaurants, swimming pools etc), eat according to pregnancy rules (no raw meat or fish, shellfish etc) and obviously do your best to avoid ill people! Wash your hands regularly and carry an anti-bacterial gel with you for occasions when you can’t. You will also be entitled to the flu jab. If you feel unwell or if your temperature rises to 38 degrees or above, contact your Breast Care Nurse or chemo unit immediately – or if they are unavailable, head straight to A&E. Inform the receptionist that you are a chemo patient as they will then do their best to isolate you from more germs! I ended up in A&E being neutropenic after my first chemo. I was givin IV antibiotics and sent home. For my following sessions I had to administer a Neulasta injection the day after my chemo and was invincible for the remaining sessions! My bloods were higher than they were before I started chemo.

Taste Buds Chemo

11) Weird taste buds. I have NO idea why – but chemo affects your taste buds and can give you a constantly yucky taste in your mouth which then makes food taste pretty gross too. Queasy Drops were my saviour – the sour raspberry ones really cut through the icky taste. Pineapple tasted really good (in any format) as did spicy food (although some doctors recommend not eating spicy food when having chemotherapy treatment as the chemo affects the stomach lining). Boiled citrus sweets and mints also took the edge off it. Unfortunately there doesn’t seem to be a miracle cure. It’s annoying – but it passes – and certainly didn’t put me off my food!!

12) Plan something to look forward to for the end of chemo. The day of your final chemo session is a bit of a let-down as you feel as though you should be celebrating, but know you still have the remaining side effects to get through. The day that you REALLY feel as though you can celebrate is the day 2-3 weeks later when you would have been having the next session if it had continued. The relief is amazing. And every day you feel stronger and healthier and hairier… So, plan something fun for a week or 2 after your final chemo. You totally deserve it. I went to Cornwall with my friends for a week of good food, bubbles and board-games and then with Mr B for a spa weekend in a luxury hotel. It lovely to have something to look forward to and to escape from the constant hospital appointments for a while.

to-do-list

13) Be aware that some side effects last after your final chemo. Unfortunately the side effects with chemo don’t stop with the final treatment. Naively, before starting chemo I thought it was all about vomiting and hairloss. I didn’t realise that there are other side effects during and for a long time after chemo. I really, REALLY struggle with chemobrain. My brain is mush. I used to be an intelligent, efficient, multitasking, thoughtful person with a practically photographic memory (if I do say so myself!). I am now so forgetful it’s not even funny.  I have zero concentration and multitasking is now a thing of the past. It is rather confusing, inconvenient and bloody frustrating. I mention this, not to scare you, but to make you aware of it, so that if/when it hits you don’t think you’re going mad (like I did! Had obviously diagnosed with early onset dementia or brain secondaries!). All we can do is embrace the to-do list and wait for our little grey cells to start behaving again! I also struggle with eyesight, severe fatigue, menopausal symptoms and my weight and fitness levels. See I is for… I’ve finished but I still feel rubbish.

D is for… Diagnosis – A Life-Changing Event

20 Nov C-Bomb

On 23 May 2011 I was told those terrifying and life-changing words – “you have cancer”. (Well, actually it was more along the lines of “you have an aggressive malignant invasive ductal carcinoma” – but it boiled down to the c-word). Having been promised for the previous couple of months that the swelling in my breast DEFINITELY WAS NOT cancer, I wasn’t prepared. I, myself, had begged for the biopsy just to put my mind at ease and, as such, was expecting them to tell me I was silly for having been so worried and to bugger off and not worry about it. However, as my consultant uttered those words (and all of the terrifying words detailing my diagnosis that followed), my world fell apart. I felt I had just been handed a slow, painful, undignified death sentence. My future, previously roughly mapped out, became a big black question mark. My hopes and dreams and plans for having a family were obliterated. I was scared of the treatment but knew the alternative was worse. I was also scared of the body-mutilating surgery. I suddenly had no choices or control over anything in my life. And I felt terribly guilty as I wasn’t the only one affected. Mr B, my family and friends were also going to be affected.

explosion-2

That was a Monday. The following 3 days were a whirlwind of scary appointments. An MRI to check the extent on the local spread. A CT scan to see if it had spread further which would have upgraded me to a terminal diagnosis. An appointment with a geneticist to start the ball rolling on whether I carried either of the BRCA genes. An appointment with a fertility expert to see if I could freeze embryos before commencing an aggressive dose dense chemo regime that would probably leave me infertile (I couldn’t – my tumour was too large, had spread to my lymph nodes and was fuelled by oestrogen). I was appointed an oncologist who said more scary words about my tumour like how “aggressive” and “serious” it was and told me my treatment plan. I visited the chemo ward and had bloods taken and my heart monitored in preparation for starting treatment. I just couldn’t believe that I was about to become part of the same world as these patients, no hair and hooked up to various drips and beeping machines. Then on Friday, just 4 days after I was diagnosed but what felt like an eternity due to all of the pokings, proddings, scans and appointments that had taken place since Monday, I had an operation to place a portacath under the skin in my chest and chemotherapy commenced.

For those of you going through this dreadful rollercoaster of emotions and endless hospital appointments, having been told those awful words, I totally feel for you. It is a terrifying and lonely place to be. However, you will slowly get your head round it and start feeling braver and stronger once you get a bit of control back in your life and start your treatment plan – that’s your chance to fight back. And the treatment is finite – there is an end in sight. Once the treatment is done life does feel good again! Different, but good. You will start hoping and planning and dreaming about your future again. Take that from someone who’s been there and done it!

If I could go back and give myself some advice for getting through it, it would be as follows:

1) DON’T GOOGLE. (Or read the Daily Mail!) So much of what you find on the internet is out of date, will end up scaring the cr*p out of you and, most importantly, could have been written by ANYONE. Stick to trusted sites such as Macmillan or Breast Cancer Care, try one of the many helplines run by trusted professionals such as Breast Cancer Care or call your breast care nurse or Macmillan nurse .

keep-calm-and-don-t-google-it

questions2) Keep a list of questions. My mind went blank every time I was with one of my consultants, so I kept a notepad constantly at hand to jot down queries that had been bothering me in the run up to my appointment. Sometimes a question would pop into my head in the middle of the night and I’m not sure I would have remembered them all through the emotional turmoil. I have found that many consultants are not very forthcoming with information unless you ask them – as many patients don’t actually want to know about their pathology or which drugs are being administered. I wanted to know EVERYTHING and wanted to understand EVERYTHING. I was probably a bit of a pain in the a*se, but it was what I needed in order to cope, and once I had a better understanding, knew the treatment plan and what was in store I felt much calmer and much more in control.

3) Deal with it in a way that suits YOU and YOUR circumstances. I needed to cry A LOT and talk A LOT but I found it very hard to spread the word as it was too difficult repeating and reliving the hospital appointments and what was said over and over again, so Mr B kept my family informed and Tennisgirl kept my close friends informed. I had less than a week from being diagnosed to starting chemo, at which point I battened down the hatches, hid away from the world and got on with it all. Some are very open about their diagnosis and treatment and keep running commentary on blogs and Facebook. Others (maybe with young children) don’t want anyone to know, don’t tell anyone, and do all they can to assume normality. There’s no right or wrong way to deal with it – you just have to deal with it in the way that is best for you.

4) Support is important. Previously I was a fiercely independent person, but the whole experience has softened me (in a good way) and I am now able to ask for help and support when I need it. If the tables were turned you would be there for your partner/friend/family member wouldn’t you? So make use of the offers of help and support when you need it.

5) Don’t be too fearful of chemo. I know the word is terrifying and the thought filled me with dread. But it is just a medicine that we are lucky to have to blast those chemo cells. It wont be as bad as you expect. I promise. See my post C is for… Chemo Shmemo.

6) Try to retain some normality in life. Do normal, everyday things so that you feel as though you still have some control over your life and to make the constant cancer stuff less all-consuming. Maybe some work, the school runs, walk the dog, see friends, redecorate a room…whatever works for you.

7) Be prepared. Take a leaf out of the scout manual and use the time after diagnosis to get prepared for your surgery and treatment. Small things such as visiting the dentist (you are not meant to go during treatment due to the risk of infection), clearing your diary of non-essential things, visiting the chemo ward(I found this really useful as knowing what to expect helped with my pre-chemo anxiety), or having a wig-fitting or ordering some scarves or buffs in preparation for hair loss. See my post P is for… Preparing Yourself for Treatment for other ideas. Anything to help you feel more prepared and more in control.

8) Remember, it’s YOUR body and YOUR life and YOU have some say in what happens to it. You need to feel happy that the surgery and treatment is the right one for you by understanding the reasons for it – not just right for the consultant. Everyone is entitled to a second opinion if you want one – either to reconfirm what you’ve been told by your assigned consultants or if you don’t feel very confident or comfortable with them or if they don’t carry out the procedures you want. I had quite a few opinions…! I had a second opinion with an oncologist who specialises in breast cancer in younger women who confirmed that the treatment plan my assigned oncologist had suggested would have been the one he would have prescribed. Jolly good. Felt confident about all of that after that appointment. Bring it on. But then I had a few second/third/fourth opinions with surgeons to find one that I was comfortable with and trusted (lost all confidence in my original surgeon after the months of misdiagnosis and the way he dealt with it once the diagnosis had been confirmed) and one who would do immediate reconstruction. Some surgeons specialise in the removal, but not the aesthetic plastic surgery side and will not do immediate reconstruction – which I was adamant that I wanted. – and others only do specific reconstruction and there might be other types that would me more suitable for you. In the end I transferred to a fantastic oncoplastic surgeon who gave me some fantastic brand new boobs at the same time as removing all of the bad stuff.

Katie Price at Selfridges

Well…not quite that big. (Sorry Mr B…)

9) Seek help if you need it. It’s a MASSIVE thing to have to deal with and affects so many areas of your life. Your mortality, your future, your family, your body confidence etc. It is enough to deal with even if you have a perfect life, but unfortunately most of us don’t and life doesn’t stop, so if things weren’t great beforehand, those issues will still be present, and other shit can hit the fan while you’re dealing with your cancer treatment. There is no shame in getting some help if you need it and don’t feel as though you’re coping very well. Most cancer hospitals and support centres (such as The Haven) offer free counselling, otherwise your GP will be able to refer you and discuss antidepressants with you to give you a helping hand through this difficult period.

friends10) Remember you are not alone. I was in a very isolated, lonely and scary place at the beginning, but slowly felt less alone as I met others going through the same thing. There are some fantastic support groups and forums out there. I went on the Breast Cancer Care Younger Women’s Forum a few weeks after I was diagnosed which was a godsend for me. There were fantastic seminars on issues such as fertility, reconstruction, nutrition etc, which were really useful – but most importantly for me I met some great girls my age, going through the same crappy thing and it was wonderful to make some friends who just “got it”. We could talk about everything – from the embarrassing side effects to the more morbid side of dealing with a life-threatening illness – which non-cancer people just feel a bit awkward discussing. If you click here you can see me in a video talking about my experience. I’m the one in the orange dress on the beach. I also signed up to the Breast Cancer Care Forum and met a couple of girls at my hospital and found it an invaluable support to be able to talk, share experiences and ask questions with others who understood what I was going through. I know some will be lifelong friends.

G is for… Gift Ideas for Cancer Patients

20 Nov

I was inundated with cards, flowers and presents when I was first diagnosed, which was incredibly kind and generous and it definitely helped knowing that friends and family were rooting for me. However (and I need to tread carefully here as I don’t want to offend anyone!) my house did end up looking like a florist’s and I quickly ran out of vases, having to make do with jugs pint glasses, and even saucepans! I love, LOVE flowers! And don’t want anyone to read this and never buy me flowers again (particularly Mr B!) but thought I would make a few suggestions for those who are struggling with what to buy for their loved one.

Green & Spring Relaxing Bath Foam and Body Lotion1) Toiletries. Now I am a sucker for smellies! And chemo is notorious for leeching your skin of moisture, so some lovely moisturising toiletries are a treat. However, it is a bit of a minefield when giving to a cancer patient as some decide to stay away from parabens and sulphates and anything with strong scents or fragrances – and we are also told to avoid some essential oils, so while a lavender bath soak seems like a lovely idea, in reality it will probably sit on the shelf as bathing in something that could feed your cancer while you’re trying to kill it is not as relaxing as was intended. However, nice, natural pampering products are a real treat – and it is important to relax and have some ‘me time’ – the fear and constant hospital appointments and treatment causes a lot of stress.

2) Entertainment. There will undoubtedly be some duvet days and time to kill in hospital waiting rooms or whilst having treatment.  Something light and easymags and entertaining is best as our brains are muddled enough with the steroids and drugs without having to try and make sense of The Works of Kafka. And NOTHING dark or depressing! So, easy-reading books, a magazine subscription or some upbeat DVDs or boxsets. I got stuck into Mad Men and looked forward to every Tuesday when Heat and Hello landed on my doormat courtesy of my lovely friends.

bottle in bed3) Cosy, Fluffy Things. Slippers, PJs, a snuggly dressing gown, hot water bottle, slouchy cardis or jumpers and fluffy socks would all go down a treat. I had a nightmare before my surgery running around trying to find button-front pyjamas – additional stress! They would make a great pressie.

Beefayre-candle-14) Aromatherapy candles. Pretty, relaxing and smell gorge! Again, it is very important to relax and take some time away from the stresses of the constant hospital appointments.

5) A nice overnight bag or washbag. Perfect for hospital stays.

Bold-Beanies-Bright-Bouquet-36) Bold Beanies Gift Bouquet. Practical and super cosy beanies that come presented as a floral bouquet. They have been designed by a friend who went through chemotherapy herself. They are really comfy and made of natural materials so they are breathable and wont aggravate sensitive scalps.

Chocolate-Buttons-Large7) The odd treat. Again, this is a bit of a minefield as some people with ER+ cancer choose to avoid all dairy products. And most treats contain a good dose of dairy! It might be safer to stick to high quality, dark chocolate which is dairy free. Unfortunately all of my edible treats containing dairy products went to waste as I read ‘Your Life In Your Hands‘ by Jane Plant and ‘Anticancer – a New Way Of Life‘ by Dr David Servan-Schreiber – both of which scared the hell out of me by saying that dairy will cause the cancer to spread. (On that note, I don’t recommend scary books as a gift! If they want to read something like that, they can easily order it on Amazon!).

8) Good, old fashioned letters. My cousin sent me regular cards and letters with humourous updates and gossip and occasionally the odd treat like some bluebell seeds. I loved my letters.

9) A charitable donation. I opened a Justgiving page so that friends could contribute to Breast Cancer Care – a charity that had provided invaluable support to me since my diagnosis – rather than buying me gifts. You could always make a donation to McMillan, Cancer Research, Stand Up to Cancer or a more specific organisation on there behalf.

Promise Cards10) AND MOST IMPORTANTLY – BE THERE. This costs nothing – but means everything. And not just at the start. Dealing with a cancer diagnosis, the treatment and the side effects is a long old shlog. The best friends will be supportive all the way through – offering help, visiting, lending a patient, listening ear and a shoulder to cry on. One of my best friends – we’ll call her Tennisgirl – is incredible. She visited regularly through my treatment, always coming via the supermarket and ensuring that my fridge was stocked up with all sorts of goodies and then just let me rant. She let me talk openly about my fears without the seemingly standard response of “oh, I’m sure you’ll be fine”. She was also a massive support to Mr B.

Since starting this blog I have actually set up a website selling pretty, pampering and practical get well gifts as an alternative to flowers. I have handpicked a number of get well gifts for cancer patients either to provide some cosy home comforts, or for practicality and use for hospital stays or to provide relief from various side effects. The name – Not Another Bunch Of Flowers – was inspired by the fact that I was inundated by flowers when I was first diagnosed! Many of my friends later said that they’d wanted to show their support but hadn’t known what to send me – so hopefully my site will help people through the get well gift minefield.

Anikka Burton